It’s hard to find your voice when you’re told your little girl will lose hers, along with everything that comes with it. We want you to meet Mila, because to have met her, is to love her. Just barely 3-years-old, Mila is a bright, sassy, and strong-willed little girl. She loves singing, feeding her teddy, and is Ms. Rachel’s biggest fan. She is also a little girl facing an uncertain future.

Over the years, Mila fell behind her twin sister, Elise, in ambulation and mobility. She was diagnosed with hypotonia (low muscle tone) at a young age. Despite many specialists visits, we were often told not to worry - “she’s a twin, she was a preemie, she’ll walk when she’s ready.”

Although we wanted to believe these words of hope, deep down we knew something wasn’t quite right. After months of advocating for our little girl, she was finally given a comprehensive genetic test. On August 8th, 2025 we received the results that turned our world upside down.

Mila's test results showed gene mutations indicating Spastic Paraplegia type 50 (SPG50), an extremely rare and progressive neurodegenerative disorder with a life limiting prognosis. She is 1 of 80 worldwide. 1 of only 8 in the entire United States. Without intervention, the disease will progress. It will take her mobility, her voice, her smile, her mind, and ultimately, her life.

There is a hopeful cure through gene therapy. A clinical trial was approved and this therapy has successfully treated 6 kids over the first two phases. Now, that cure is quite literally sitting in a freezer; additional children can’t be selected for the trial until the pharmaceutical company is paid. Mila is joining 5 other families, through Jack’s Corner, a non- profit dedicated to this mission of raising money so more children can receive these final doses. (Mila's Corner will be here soon!)

To date, these families have raised 1.8 of the 3 million dollars needed to continue moving forward with this phase of the trial treatment. You can learn more about these children’s stories, the effects of SPG50 on their families, and the work being done to cure this disease by following this link: www.Milascorner.org

Time is not Mila’s friend, and if the FDA doesn’t approve additional treatment outside of this study, your donations could be Mila’s last chance. As of today, Mila has already begun showing the first set of symptoms that this disease brings, but every day that passes without this treatment, is worse than the last. We are hopeful she can receive this treatment before SPG-50 causes irreversible damage.

We are taking our grief and anger and putting it towards the mission of funding this next trial. We can’t do this alone.

Your support will help cover the cost of the gene therapy drug needed to kickstart Phase 3 of this clinical trial, as well as medical care costs and travel to specialists. Mila is not just 1 of 80. She is so much more than a number. To us, her twin sister, and her two older brothers, she is everything and we will fight for her. We beg you to fight with us. Your support could help save our everything. You could help save our little girl.